Browse Items · Pediatric Palliative Care Library

Moral Distress and Pediatric Palliative Care

Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional…

Shared decision-making in pediatric palliative care

Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of…

Tags: 2023, Carter BS, Current Problems in Pediatric and Adolescent Health Care, End-of-life Care, February List 2024, Palliative Care, Parents, Shared Decision-making, Stroh JT

Perinatal palliative care in sub-Saharan Africa: recommendations for practice, future research, and guideline development

Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of…

Tags: 2023, 2023 SE5 - Low Resource Setting, Abayneh M, Africa South of the Sahara, Carter BS, Deribessa SJ, Frontiers in Pediatrics, Kassa BB, Kukora SK, low-middle-income-countries, neonatal end-of-life care, neonatal intensive care, newborn bereavement, Palliative Care, Perinatal Palliative Care, Rent S, Sub-Saharan Africa, Tekleab AM, Ubuane PO

An ethical rationale for perinatal palliative care

Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth…

Tags: 2021, Carter BS, end-of-life, Ethics, January 2022 List, Neonatology, Palliative Care, Perinatal, Seminars in Perinatology

Being a presence': The ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children

Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home. Home-based care can put family life under considerable strain, as parents care for their…

Tags: 2014, Backlog, Carter BS, Edwards M, home care services, Hunt A, Journal Article, Journal Of Child Health Care, respite service

Loss in the NICU Sibling Matters

Siblings of patients that have lengthy stays in the neonatal intensive care unit (NICU) may be affected emotionally by their brother’s or sister’s condition, separation, or even death. In an effort to assess the effect of perinatal loss on siblings a…

Tags: 2013, American Journal of Hospice & Palliative Medicine, Backlog, Bereavement, Carter BS, Family, Intensive Care, Journal Article, Loss, Neonatal, Robinson E, Sandler CL, sibling bereavement, Siblings

Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations

Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life,…

Tags: 2013, Adolescent, Backlog, Carter BS, Child, Fetus, Feudtner C, Friebert SE, Hood M, Hospice Care, Imaizumi S, Infant, Jewell J, Journal Article, Komatz K, Newborn, Palliative Care, Pediatric, Pediatrics, Young Adult

Pediatric palliative care: feedback from the pediatric intensivist community

With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and…

The ethics of withholding/withdrawing nutrition in the newborn

The provision of nutrition and hydration to newborn infants is considered fundamental care. For premature and critically ill newborns, similar considerations generally hold true. Nutrition may be provided for these infants using assisted measures…

Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care.

OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children,…

Guidance on forgoing life-sustaining medical treatment

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the…

Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL

Ethics and palliative care in the perinatal world

The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute…

Tags: 2017, Carter BS, Counseling, Ethics, Marty CM, Neonatal, November 2017 List, Palliative Care, Perinatal Decision-making, Seminars in Fetal and Neonatal Medicine

Advance Care Planning: Outpatient Antenatal Palliative Care Consultation

Kukora and colleagues report on their single centre study of antenatal palliative care consultation (APCC) and reveal that this practice—though applied in a limited number of cases—contributed to a greater use of postnatal palliative/comfort care…

Tags: 2017, Adult, Advance Care Planning/organization & Administration, Archives of Disease in Childhood. Fetal and Neonatal Edition, Carter BS, Female, Humans, Infant Newborn, March 2017 List, Outpatients, Palliative Care/organization & Administration, Pregnancy, Prenatal Care/organization & Administration, Referral And Consultation

Quality Predictors Of Parental Satisfaction After Birth Of Infants With Life-limiting Conditions

AIM: This study examines parental satisfaction with care received in the context of a life-limiting fetal diagnosis and subsequent birth. METHODS: Survey methods were utilized to embed the Quality Indicators (QI) and Parental Satisfaction of…

Tags: 2017, Acta Paediatrica, Carter BS, Foetal Diagnosis, Kain V J, Life-limiting Condition, Mendes J, Parental Satisfaction, Perinatal Palliative Care, September 2017 List, Wool C

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